Programs & Services
NOAH, in partnership with Lighthouse Guild International, has developed a free parent support teleconference program as another way to bring the albinism community together. Parent Connections is an opportunity to talk with others who understand what you are going through as a parent of a child with albinism. The teleconferences are facilitated by a licensed professional and consist of a limited number of parents. This provides a safe and comfortable environment for you to voice concerns, ask questions, share your experiences, and hear from professional guest speakers.
Join the Gang!
In the Parent Connections teleconferences, parents of children with albinism meet two times a month to discuss relevant topics with each other and learn from our guest speakers. To join us, please fill out the brief intake form, and the Parent Connections Coordinator will contact you soon!
Upcoming Sessions Teleconferences start at 8:00 pm CT (6:00 pm PT, 7:00 pm MT, 9:00 pm ET).
This call is open for all high school aged kids with albinism and their parents for an open discussion about issues in high school and tips on transitioning to college. We will have a few high schoolers and college students ready to share their experiences and answer any questions you may have about high school and college.
Thursday, March 2nd - "High School and Transitioning to College Students with Albinism and Parents"
Wednesday, March 22nd - "Homeschooling Children with Albinism" with Tricia Thomas
Do you homeschool your child with albinism? Have you always thought about homeschooling? This is the call for you. This call will provide a platform for parents to connect and share their resources on homeschooling children with albinism. We will have some time to ask the more experienced parents, like Tricia Thomas, on home schooling questions and advice.
Tricia Thomas - Tricia has a degree in early childhood education and taught and directed in childhood centers prior to having her own children for 12 years. Tricia has homeschooled her two children, the youngest is 16 and has albinism. She currently is an early childhood literary teacher at her local library. She is very active in NOAH and has had many different roles. Recently she coordinated the last two conferences children’s programs.
Monday, April 3th - Discussion on Siblings of Children with Albinism
Please join us for a call when we discuss the issues and feelings that siblings of children of albinism may experience and strategies on how to address them as a family. Our guest speakers will be Ellen and Joe Sartorius and their daughter Emily, who helped bring these issues to the public in the book: Beyond the Stares, A Personal Journal for Siblings of Children with Disabilities.
Monday, April 24th - Connecting Families with Young Children
Adjusting to life as a parent of a child with albinism is a unique process that at times can feel isolating and leave a parent full of questions. Join this call and become part of a community that truly understands. This call will allow for parents to share their questions and concerns as well as provide an opportunity to learn and support each other. We will not be recording this call-to provide a safe place to share feelings.
Thursday, May 4th - "Open Discussion with a TVI who is also a Parent of a Child with Albinism" with Gianna Guskey
Gianna will share her journey as a mother of a child with albinism and the road that lead her to become a Teacher of the Visually Impaired and an Orientation and Mobility Specialist. Gianna Guskey has worked in the District 15 in Palatine, Illinois for the last 12 years and she has a 14-year-old boy with albinism. She will answer questions about what is the role of a TVI and share her personal experience from being a parent of a child with albinism. Gianna will discuss tips for parents when working with TVIs and what to expect from them.
“How We See” for Parents and Family - Matt Bailey [Date To Be Determined]
Check out the audio recordings (when available) and descriptions from our past sessions.
February 20th - How Do You Do That with Joni Vella
January 30th - "Dealing with Comments and Questions about Albinism"
January 19th - "Connecting Families with Young Children"
RECORDING NOT AVAILABLE
December 8th - "Fathers of Children with Albinism"
November 15th - “Making Sense of Sensory” How Can Occupational Therapy Help My Child with Albinism? - Becca Evans
November 10th - Finding Your Passion in Helping People with Albinism – Susan Leslie Dubois
October 18th - Making Connections for the Newly Diagnosed – Sheila Adamo
October 4th - Lions and Tigers and Bears! Oh My! Early O&M from Birth to Pre-School - Marjie Wood
September 1st - Transitions throughout the School Years - Scott Truax
Throughout the school years there are several transitions that your student will experience. From elementary to middle school, from middle school to high school and then on to college or the workplace. This call will help you support your student through these changes, including preparing for their upcoming educational needs.
Scott Truax, B.S., COMS, M.Ed. - Scott Truax has worked in the blindness and low vision field for over 40 years. Since 2005 he has been program manager for CareerConnect®, an AFB web program that offers free resources and tools for students and job seekers with vision loss as well as the professionals who work with them, their families, and potential employers. Prior to joining AFB, Scott worked for the Washington State Department of Services for the Blind, where he was a Service Delivery Coordinator and Child and Family Consultant. He also worked as a Vocational Rehabilitation Counselor and Orientation and Mobility Instructor for various organizations in Washington and Texas.
August 18th - The NOAH Conference Experience - Mike McGowan
Join us for a call with Mike McGowan, NOAH's Executive Director, and other Parent Connection members as they bring the highlights of the NOAH conference home to you. They will also be available to answer your questions regarding any new information or presentations at the conference. If you attended the conference, please join us to share your own highlights and experiences.
Mike McGowan - Mike McGowan the Executive Director of NOAH and a person with albinism. He holds a Bachelor of Science in Political Science from Loyola University of Chicago and a Master of Science in Management of Public Service from DePaul University. He was the Director of Information Technology for the Chief Judge of the Cook County, IL Circuit Court. In addition to his duties and involvement with NOAH, Mike has served on the capital development committee and centennial committee of his church, and on his local private school board. Mike has served on NOAH’s Board of Directors since 1995, as Secretary from 1995 to 1997, as 2008 Conference Committee Chair, and on the Albinism Awareness Committee, prior Conference Committees, Advocacy Committee, as an Adult Day organizer, Family Camp organizer and Bowl-a-Thon team leader since inception of the program. Mike has been involved in day-to-day operation and management of NOAH and all projects, activities and committees since 2001. He is also active in the Northern Illinois Chapter of NOAH which has been responsible for the majority of NOAH Chapter fundraising and activities. Mike lives in Chicago with his wife.
August 11th - Individualizing the IEP Process: IEP Basics - Kim Avila
IEPs contain several components, each of which are vital for reflecting an individual student’s needs. This call will provide an overview of the IEP process and acquaint parents and guardians with strategies to actively participate in crafting IEP goals and making service delivery and placement decisions. Discussion will include considerations for ensuring each child’s unique needs are addressed within the IEP.
Kimberly Avila, PhD, COMS: Dr. Avila is an assistant professor and coordinator of the Virginia Consortium for Teacher Preparation in Vision Impairment at George Mason University. She has extensive experience working with individuals with blindness and visual impairment of all ages and served as a teacher of students with visual impairments, orientation and mobility specialist, accessibility specialist, and early intervention service provider. Kimberly’s research, publications, and presentations have focused on pedestrian safety issues that affect persons with visual impairments, braille literacy, transition, methods to promote developmental growth, IEP and accommodation advocacy and she has collaborated extensively on policies affecting the blindness population.
June 9 - Adapting to Parenting a Child with Albinism
May 26th - Parents who have Adopted a Child with Albinism
April 28th – Raising Twins who have Albinism - Either One Twin or Both